


FFI; how the lively became dull

by MRLM001



Category: anime - Fandom
Language: English
Status: Completed
Published: 2020-11-12
Updated: 2020-11-12
Packaged: 2021-03-09 21:06:48
Rating: General Audiences
Warnings: Major Character Death
Chapters: 1
Words: 3,508
Publisher: archiveofourown.org
Story URL: https://archiveofourown.org/works/27532729
Author URL: https://archiveofourown.org/users/MRLM001/pseuds/MRLM001
Summary: Fatal familial insomnia is an extremely rare autosomal dominant hereditary prion disease of the brain. From birth the disease is not yet visible. Death usually follows 7 to 36 months after the first manifestation of the disease. the disease knows no treatment.





	FFI; how the lively became dull

**Author's Note:**

> This story is writing in the POV of the main character and you're literally in her thoughts. The name is unknown for a reason and will be relieved at the end. This is inspired from In Another Life - Bokuaka.

Fatal familial insomnia is an extremely rare autosomal dominant hereditary prion disease of the brain. From birth the disease is not yet visible. Death usually follows 7 to 36 months after the first manifestation of the disease. the disease knows no treatment.

phase 1: The patient suddenly suffers more and more from insomnia symptoms. This causes the patient to have panic attacks, paranoia and phobias. This phase lasts about 4 months.

It’s night number 8 since my sudden sleep problems. My mind is tired. My body is tired. My eyes still lively as ever. They refuse too close. They just can’t rest. I turn around and lie on my left side. 4:36AM. Another night without any sleep. That’s means I have to rely on coffee and sugar a lot today. Those things keep my mind awake. Without the caffeine focusing and functioning is hard. I roll myself out of my bed and fall with a bang on the floor. Still laying on the cold floor, I open my laptop and go to the site where I spend most my time on: 4anime.to. Schoolwork is hard. I can’t concentrate, I never could, but now it’s even worse. I slap myself on both my cheeks. Not the time to be depressed about some sleepless nights. Time to watch Wotakoi: Love is hard for a Otaku. 

6:17AM. The first sun rays will appear soon. I run towards the attic and open the skylight. The first sun rays are the most beautiful and lively ones, but before you know it, they disappear. I take place at my usual spot on the roof. The cats of the neighbor are sitting next to me. They always do. When they first noticed me, they were scared as hell, but I think they see me as their friends. Isn’t that amazing? I’m not only friends with my fellow humans, but also with cats. The wind slowly strokes my hair. I take a deep breath and feel the humid air enter my longues. The morning is beautiful, but i miss the mornings where I snooze till i don’t even hear the alarm anymore. 

“Hey, are you feeling well? You are really pale..” I turn around and see my friends Emma and Ellemiek. They look at me with a questioning gaze. “Yes. Just another sleepless night. But it’ll be over soon! Don’t worry.” I’m trying to shrug it off, but in exchange I get an even more worried look. “You know, I think you should visit a doctor soon. It has been more of a week since your last night sleep and I’m starting to think it isn’t just a simple sleep-problem..” “I’ll call them this afternoon, I promise! I also prefer a normal length of sleep.” you throw a smile at them. “Good. Tell me if you really can’t take it anymore, okay?” I nod and soon after started a conversation about how adorable Nishinoya is when he does the Rolling Thunder.

“How should I bring it?” I give the doctor a questionable look. “What do you mean?” My heartbeat is slowly rising. What does he mean? Where is this going? “Have you ever heard of FFI?” “N-no mister.” “I’m sorry to bring this to you, but IFF is an extremely rare disease and there is no treatment for it.. In extreme words: You aren’t here anymore in 3 years..”.

I just met a new feeling. The feeling of fear, but it isn’t the fear you know. This anxious new feeling. It’s so hard to describe. This feeling has so much dullness, but at the same time it gives you those small panic attacks. Two words keep repeating themselves: “why me? Why me? Why me?”. My future suddenly became a lot shorter than I planned. All my dreams faded away in front of my eyes. I can never go to Japan. I can never marry someone. I can never see myself growing older. It will all stop. In a few years, I’m nothing but a name and a memory. My world is crumbling. My future is crumbling. The world I lived in faded and turned into a hospital: The building who was always so far away from me, but suddenly created a new name for itself, my last place I can call home. 

The doctors insisted that I must be hospitalized, to increase the length of the time I still have left. So many things corruptly stopped at the moment I left office of the doctor. I’ve had my last school day and my last workday. Scouting was also over for me. So many things were over. It was like my life ended already. 

How should I tell my surrounding that I’m currently slowly dying? That’s a good question. I don’t know the answer to that either. I’m currently staring at my phone screen, trying to type a message. I want to tell the news in person. It’s so lame to do it on app, but how should I bring it, that I’m currently in hospital? That doesn’t decrease the shocking-effect. 

After 15 minutes of arguing with myself, I created my masterplan! I’m not going to tell them to come to this hospital and I’m not an idiot who brings the message by text. I’m going to visit the place I once hated so much, but now kind of miss: my old school. O, I haven’t mentioned that it’s currently 3:42AM, my bad.

I’m currently sitting in a random classroom, waiting for the bell to ring. It’s a week ago since I been here. How much can change in only a week. It’s kinda weird, huh? I already asked the principal if I could use an empty classroom. Yes I can look ahead! I also texted my friends if they can meet up me here during the lunchbreak. I hope they saw it. I know this sounds selfish, but I even hope they noticed my absence. I’m sitting on a table while dangling my legs back and forth. This classroom has so much memories. It’s the classroom where we always had Drama together. Ellemiek and I were always a pare, and to honest, we were so bad at acting. In the begin of my third year here, we had to prepare a stage-fight. While performing it, I stumbled backwards and hit the ground, and we started to laugh in the middle of our play. Unlike us, my other friends, Emma and Lisa, were incredibly good in this whole acting thing. They always came up with the funniest ideas and they knew how to perform it in the best and funniest way possible. Even thinking about it gives me smile. This classroom wears so many beautiful memories. 

Finally the bell rings and a few minutes after the loud noise, four figures stood before me. These four figures are the girls who I currently interact the most with and I can call my home. I maybe never said it out loud, but when I’m with them, it feels like coming home. It’s safe to be with them. I can be myself. I can talk about my weird obsession and be my hyperactive self, without worrying about a judgement. I don’t even have this with my family. “Wow, you even look more tired that a week ago.” “What happened?” “Where were you these last days?”. So many questions. I need to breathe. I was never good in doing many things at the same point, but with my current situation it’s even harder. “I-I’m going to explain it, but please sit down. This is going a lot to take in.” They did what I told them to and took place at the surrounding tables. “Do you know something about FFI?” They only response I got back was silence. “So, it’s a extremely rare disease in the brain. To be honest, I don’t want to explain it, because it sound so scary, but I know it’s going to happen with me as well.. But basically, I can’t go to sleep. It’s sound kind of lame, but literally my death case will be a lack of sleep. In other words.. This disease knows no treatment and will lead to dead.. I’m sorry.” Tears found their way to the ground and they weren't just mine. Everyone in this room helped with the lake of tears. “I-im so sorry..” I repeated myself once again. It hurts so much to see my friends cry because of something I said. I know, I know, I think in weird ways, but I just want them to be happy. That’s my main priority after all. 

I escaped from the hospital, again. It sounds very illegal, but I just told the reception I was heading out for the afternoon, nothing more. But it feels like escaping. The hospital feels like a prison. The only things that entertains me there is my laptop. When I watch my anime-series, I feel like I’m escaping reality. I’m in a completely different world, living a completely different life. I can actually accomplish things and make the world a better place, but that’s all over when the episode ends. After all, this little sick girl isn’t going to accomplish anything anymore. Now that I think about it, how would the world look like if I wasn’t here? Like, there would be some minor changes, but you never know. Maybe without my birth the world would have ended already. Okay, who am I kidding? I know the butterfly effect is scary, but it isn’t that scary. I’m making my way towards Harmelen. I really want to visit Emma and Ellemiek. Even though they come quite often to the hospital to visit me, it doesn’t feel the same. It’s hard to go on bicycle, so I’m traveling by bus. It’s been 3 months since I’m hospitalized. I can pretty much everything a normal person can do, but it’s getting harder. I have less concentration and I’m spacing out quite a lot. I have less strength in my body and I've also met a new phenomenon: Panic attacks. They are very light, but that doesn’t change to fact that they are there. the duration of it is usually a few minutes, but those few minutes feels like hours. My heart starts beating faster and I can’t breathe properly. The doctors said it’s a symptom of FFI and it brings a message with it: Phase 1 is slowly coming to an end. 

I’m currently settled on Emma’s bed. The bus ride was a success and now I’m here. It’s already 1:00AM and we’re currently watching a weird movie. It’s called Twilight and according to Emma it’s a classic. Honestly, I don’t get it. This Edward guy is creepy, and when I say creepy, I mean horribly creepy! Like, how does Emma fall for a guy who has literally no personality and no hobbies except from Emma and stalking Emma. I mean… He isn’t even that handsome. Emma seriously has problems. I was so deep in my thoughts, that I didn’t even notice that the two girls, who were sitting beside me, are currently lying beside me deep inside their dreamworlds. A small smile appears on my face. They look so peaceful. Okay, stop it! I’m turning into that Edward-guy right now! Watching people sleep is something creepy! I try to crawl out between the two girls as carefully as possible, which is a success. I take place at the desk and pull my laptop out of my bag. It’s no coincidence that I have it with me. I kind of knew this was going to happen, I mean, everyone eventually needs sleep, right? Okay, I know what you’re thinking, but I’m a different case. I look again at the two girls. How does It feel to fall asleep? It sounds weird, but I forgot. I know it is a peaceful feeling, but how does peaceful feel? Okay, my brain is working overtime. Let’s start with this anime called ‘Non Non Biyori’ and wait till the morning begins to show herself again. 

It’s currently July, and today is a big day! it's the day of graduation, and guess what? All my friends have passed the exams and have currently finished school. I of course am here to support them, even though I wanted to be in the same position. I know it is kinda useless to walk out of the school with a diploma, while you have a lifespan of a few years, but it’s just such a big milestone! when you have your diploma, your life really begins! You’ve reached your first milestone. My friends are currently posing for photo’s and I’m just standing at the sideline. After a few minutes, Emma grabbed my wrist. “You’re also part of this!” She says with a smile. This little comment lightened my whole mood and the biggest smile appeared on my face. After a few pictures we the moment of truth was there. The photographer handed over the camera, so we could see the picture: I was literally shining. After this day, this picture got a beautiful place on my hospital wall. But that was not the only thing that happened after this day. In the month July, the first phase ended and the second phase began. 

Phase 2: Hallucinations and panic attacks become noticeable. Due to the extreme lack of sleep, the patient now even has dreams while awake. This phase lasts about 5 months.

It’s August. The month of summer and vacation. this also applies to my friends. Everyone is currently in a totally different place, far away from me. It’s kinda lonely here, I’m not gonna lie, but I can’t expect from them to stay here, just because of me. That’s really selfish. 

I’m trying to visit the outside world as much as possible, but it’s really hard. My legs are slowly giving up and the scenery is so boring. The hospital is located in the middle of an industry-terrain. My body also reacts a lot worse to the heat than before. I get easily sunburns, so it’s best to stay inside. 

I’m currently starting my 256th anime. In these few months, the only thing I could do to lighten my mood is watching anime. I want to escape reality so bad. I keep overthinking and it makes me really anxious. The loneliness is swallowing me and everything is so overwhelming. 

It’s October. The hallucinations are getting worse. Lieke moved to Breda, so she could study there, so she isn’t supposed to be here. But why was she here yesterday? That Lieke looked so realistic. I even had whole conversation with her, but when Kris walked in of the room, she said there was nobody. 

November, the month of… What’s so special about November? I don’t know. Anyway, that not what I wanted to say. What happened this month? O yes! Ellemiek told me about her match last week. She became first and has now a new title: Utrecht's champion. So she’s going to nationals in June. I really want to witness it, but I don’t know how my state is by then. We will see! 

It’s so dark. So lonely. Where is everybody? Did everyone left me? I’ll always be lonely. I’ll never know love. Why am I breathing so fast? What is this? My heart is breaking out of my chest. Why is nobody here. I haven’t seen anyone for days. Where is everyone? What’s going on? Am I going to die right now? I don’t want to die? Everybody hates me. What’s going on? Where am I? I can’t breathe…

The panic-attacks are getting worse. The duration of them changed drastically. Sometimes, it takes a hour to turn back to my calm state. Panic attacks are horrible. It feels like I’m constantly dying. Not that I’m not dying, but you know what I mean... It makes me so scared, and most of the times there is nobody to comfort me. It’s so so scary..

It’s the end of December, what means that it’s Christmas time! I’m going to make the best out of it, knowing that this is my last Christmas. That sounds so sad, but it’s true. I know my state is going downhill, I feel it. I going to make the best out of it! I’m going to eat the most delicious food and we’re going to do fun games, so there’s nothing to worry about. I even bought presents! I couldn’t go and buy them in a store, so I just ordered them online, so I hope it’s worth it. Kris, Lieke, Ellemiek, Emma and I are all assembling at Kris’ place. It’s the second day of Christmas, so everyone already celebrated Christmas with their family. I haven’t seen my family in a while. It’s like they disappeared long ago. O, That’s right! They moved to Slovenia, to make their dreams become reality! I stayed here, because of school and stayed at my own apartment. Who’s currently staying at my apartment? Is my furniture still there, or is it empty? I haven’t told my parents yet and I don’t think anybody informed my parents, because they are still in Slovenia. Or maybe they hate me. That’s also a possibility.   
It’s 4:00AM, and everybody is currently sleeping. This is a great opportunity for me to clean this mess, because to be honest, it looks like there exploded something inside this house. I want to do something to help the others, after all the help they gave me. I have to do my best!

Happy new year everybody! It’s the first of January, which means, my last year has begun. I can feel it: My body is every day getting a bit weaker. I have to take action if I want to leave something behind, so I decided to write a few letters. I mean, it’s January the first, so a perfect day to think back about what happened last year. Okay, take that last part back. This isn’t only about last year, but about my whole life. Yes, you guessed it right! I’m writing my goodbye-letters. It’s better to be prepared for the worst, I mean… soon I wouldn’t even be able to walk, so writing is all the more impossible. I want to leave something before I go. I want to make sure everybody can move on with a smile. Of course I want people to remember me, but I don’t want people be stuck in my dead forever. 

Phase 3: Complete insomnia is combined with very rapid weight loss in the third period. The previous symptoms worsen, and there are signs of diminished mental capacity and possibly early signs of dementia. This phase lasts about 3 months.

Everyday a nurse comes inside the room to check my weight, and to be honest, I’m really scared. The numbers are decreasing on a high rate. I've always had underweight, 49 kilos, to be precise, but currently I’m 28 kilos.. it’s halved. I look horrible. I can be the skeleton in Minecraft. You can see every bone in my body. It’s scary.

I’m going to die! I’m going to die! Everything is going to end! I feel like dying right now? How do I breathe? What’s going on? I’m dying. I’m dying. I’m dying.

I can’t walk. My body is just to weak.. My legs don’t have strength. This is so scary. Am I stuck to this bed for the rest of my life? 

Today Ellemiek and Emma brought a cake. They said it is my birthday, but it took a while to remember. It was really scary.. My brain is forgetting little things and I don’t know how. 

I can’t eat anymore. My arms are almost numb and the same goes for my jaw. the doctors connected me to a crazy device with tubes. They said it gives me my nutrition. 

I can’t talk. Everything is almost numb in my body. I want to say so much, but I can’t. It’s really frustrating. My friends are coming over quite often. Their names were.. What were their names? There was someone with horses. And someone who loves that weird party. What was the name of that party? Karnemelk? No.. I don’t know.. I can’t remember it.

Phase 4: Dementia, in which the patient no longer reacts on the environment, or is unable to talk, is the fourth and final phase of the disease and lasts about 6 months. However, the patient remains aware of what is going on with him. After this phase the patient dies.

So alone..

Empty..

Where is everybody..

Who is everybody?

Everything is blurry..

I’m going to die..

It’s happening..

Where am I?

O that’s right..

Hospital..

FFI..

I’m dying..

I feel my hart is slowly stopping..

It hurts..

I can’t breathe..

My body feels so weird..

It hurts so much..

My lungs are on fire..

My heart is stopping..

My head hurts..  
So this is it?

Yes..

This is the end..

‘Sleepwell.. Joyce.’


End file.
